Lucas Thai Tran 11/07/03-10/16/07
Lucas Tran Purple Memorial Fund was set up to honor Lucas & support children's med tx.Click here to donate online.See 12/11/07 entry for Fund details.View slide shows,videos,& a photo essay under "links" (please note: there are photos of his death).Learn more about his journey under "journal".Summary of his tx is under "my story".
On Friday 8/13/04,during a 9mth wellness checkup,Lucas was diagnosed with neuroblastoma,a childhood cancer.The primary tumor was located above the adrenal gland on the rt side of Lucas' body and extended past the midline to the lft side.There were also some nodules in the liver.
Because the primary tumor was large enough to cross the midline of the body and spread to the liver,Lucas' condition was characterized as INSS Stage 4(the most advanced stage).One piece of good news was that no cancer was found outside of the primary tumor and the nodules in the liver.The 2nd piece of good news came from the biopsy result which indicated that the tumor is MYCN amplified negative.This marker is used to determine how aggressive the cancer is and thereby how aggressive the treatment must be.An unfavorableMYCN amplified result would have made Lucas a high-risk case. Since it was favorable,Lucas' condition was considered intermediate-risk.Unfortunately,another test result from the biopsy indicated unfavorable for the tumor cellploidy marker.This means that Lucas will need to undergo 8 3-week cycles of chemo instead of 4.According to the American Cancer Society,the 5-year survival rate for children with intermediate-riskneuroblastoma was 80% at the time.The 3rd marker,Shimada classification of the tumor cell,was favorable but did not affect the treatment plan because the ploidy marker was already unfavorable.
After completing 8 cycles of chemo,the primary tumor shrank significantly.Lucas then had a debulking surgery in which 90% of the shrunken primary tumor was removed.The doctors hoped that the nodules on the liver were killed by chemo because they were risky to surgically remove.The liver nodules and remaining tumor were monitored by scans every 3 months.One year after the surgery,Lucas' oncologists believed that it was safe to space the scans out every 6 months because the chance of a relapse for his risk category was so low beyond that point.Four months after this point,Lucas complained,"my tummy hurt."On Tuesday August 29, 2006,further testing showed that his tumor was back and perhaps bigger than ever.Worse yet,the cancer cells had spread to his bone marrow.
The new tumor looks to have grown out around the remaining portion of the original tumor.In the bone marrow, the portion in the right upper arm has a high concentration ofneuroblastoma cells.The bone marrow in the left upper arm also has heightened concentration but to a lesser degree.There is also a lump near Lucas' left collar bone,probably from a cancerous lymph node.With this relapse,his condition is now being treated as a high-risk case.According to the American Cancer Society,the 5 year survival rate for children with high-riskneuroblastoma is 30%.
He started the COG ANBL02P1 protocol and finished 5 cycles of chemo(consisting of Cytoxin,Doxorubicin, Cisplatin,Vincristine,Topotecan,Etoposide/VP-16) at LPCH followed by an incomplete resection at MSKCC.Then he completed the 6th cycle at LPCH followed by MIBG-I131 treatment,conditioning (Melphalan,Carboplatin,and VP-16),stem-cell transplant,and 12 days (6 days of large field,6 coned in) of radiation at UCSF.We left for NY 5/16 to start 3F8.MSKCC gave away our spot in the study so Lucas waited for an extra month to start 3F8 with glucan.At the beginning of July,his liver function tests became elevated (5-6 times normal) just before a new 3F8+glucan slot opened up for him (so he did not receive 3F8).In the meantime, he had started Accutane.Halfway through the 3rd cycle of Accutane,Lucas complained of headaches and extremity pains.September 20, 2007,he had an urgent head CT which showed metastasis to the bone between the eyes.Later that day,Lucas had his first MRI which showed more extensive disease--both optic nerves were encased with tumor.He had 12 doses of head radiation and tookTemodar (without Irinotecan due to concern that both would sensitize his head too much for radiation).
Sadly,the cancer rapidly progressed and took his life.He is dearly missed by his father-Chinh,mother-Thy,big sister-Kira,and baby brother-Aiden (that he was looking forward to meeting but only knows as a dot from the 1st ultrasound picture).
It would mean so much to us if you read through this journal and share Lucas' story.All we have is his memory now and don't want him to be forgotten.For an overview of Lucas' life,read entries starting September 20, 2007 (when we found out Lucas' cancer progressed)-present.
Please note that cb asks for donations.This is not something we added to the website,it is a standard format that they have set up.We can not edit the statements or remove them.The donations through Caringbridge help support their efforts,it does NOT support LTPMF.
Our primary purpose for continuing this website and LTPMF is to keep Lucas' memory alive.Do not feel uncomfortable contacting us because you can not contribute to the fund.It is much more important to us that he is remembered and that his story is heard and shared.
Nov 7, 2012 1:14pm
Grief is unlike other emotional trauma where our defense blocks it out or refocuses us away from the most difficult memories. With grief, we don't want to forget. We want to hold on to as many memories, happy and sad, as we can...or at least I do. I want to hold on to my remembrance of Nookie as whole as possible because that's all I have of him now.
Most of the instances when I think of Nookie are poignant. I often start off remembering something joyful and that would lead me on to other memories that fill in his life much more fully. For example, when it's a beautiful day, I would remember that he used to say "it's a beautiful day. I had a good time." Nookie often said this after he had an enjoyable outing. At first, I thought he really enjoyed being outside on a nice day. But he said this one time on an overcast day. That's when I finally realized that he simply meant a beautiful day as an experience and not a literal comment on the weather.
I'd like to share with you an example of my train of remembrance. I start off remember an instance on one night when we were walking out of the Container Store on Santana Row in San Jose. Nookie said, "it's a beautiful night. I had a good time." He loved to run around that spacious store and play with bottles, containers, and other household items. Joy for Nookie was often so simple like this, just a trip to a store. Whenever he saw scented candles in a store, he asked me to bring down one of each scent so he can smell it. He also loved to taste the variety of food samples at Whole Foods during the year he was out of treatment. But after the relapse, he was constantly under treatment again and often neutropenic so he was no longer allowed to enjoy even something that simple. Then, I would think how special these simple trips were to him, and how often he missed being able to taste the sample foods, and how many times he could not even go to a public place because he was neutropenic or at the hospital. I still cringe at all the surgeries, nauseating treatments, and pokes he had to endure. Because we could not cure him of his fatal cancer that also caused him so much pain during his short life, I cherish in an overblown way the little victories. During his last relapse, his frail little body was so beaten down that he was constantly tired and dealing with the headache and blindness in one eye. Physically, he was a shell of the lively happy busy boy we all knew, but we could still tell it was still our Nookie inside. I still remember clearly one of his last visits to UCSF. When the nurse told us what needed to be done that day, she explained that they need to get some blood from Nookie there then he would need to have blood taken again at the clinic across the street. After the nurse left to get things ready, I asked Nookie if he knew what will happen. He was so tired that I wasn't sure he was even listening. He was propping his face up with one hand while listlessly looking into space, but he answered, "they are going to poke me to get my blood." Not wanting him to be surprised when we go to the clinic later, I asked if he knew what they will need to do at the clinic later. With his voice slightly breaking, he answered, "they are going to poke me again." I had asked the nurse if they can simply draw the additional blood there so Nookie wouldn't have to be poked twice, and she arranged for that. I was so happy at this little victory even to this day. It's surely an overblown sense of achievement because we were not able cure his cancer or even get rid of all the pain and discomfort he was enduring, but somehow this really stays with me. Nookie had been poked many times at this point, but he laid there still curiously looking at the nurse preparing the syringe and needle, wiping down his arm with an alcohol pad, completely calm the whole time although he knew well by then what was coming. As soon as the needle broke the skin on his frail little arm, he let out an involuntary cry of pain but kept his arm still as he knew he needed to do. Once it was done, he stopped, resigned the entire time that he needed to endure another poke without complaint. My remembrance of Nookie often follow this train from simple joyful memories, to the pain and suffering he endured, to the maturity and courage he showed. I still rely on his example to inspire me in my worst days when I miss him the most and am grasping at ways to cope. But if he went through all that before ever turning four and not complain, I need to follow his example.
Aiden has been asking more and more about Nookie. He knows he has a brother name Lucas who we call Nookie. Recently, Aiden seems less patient asking when Nookie is coming and commenting that it's been a long time. He asked Thy if Nookie will be here for his birthday (today). We told him that Nookie won't be here, but we'll celebrate Nookie's birthday for him. Like Nookie, Aiden likes to climb onto my lap when I'm at the computer. Aiden also likes me to open up an empty file for him to type into. On February 24th, I left him to type while stepping away for a moment. Before I stepped away, he asked me how to spell "are". I told him. Then, he asked how to spell "here". After I told him, he went on to complete his typing. When I came back a minute later, he showed me what he had typed. I had to show Thy right away. Then, I saved the file. This is what Aiden had typed:
Aiden kira thy dada are here and nookie is not here
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